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Friday, May 13, 2011

Fibromyalgia Awareness Day Guest Post by Toni Marshall of The Northern Virginia (NOVA) CFS/ME, FMS, & OI Support Group: Awareness Benefits Me

Blogger was down yesterday and most of today so this is one day late.  

Toni and I met at the National Fibromyalgia Association's Leaders Against Pain conference in August of 2008.  She's an active member of the very active and long standing Northern Virginia (NOVA) CFS/ME, FMS & OI (Orthostatic Intolerance) support group (http://cfsnova.com). 

Toni is a prolific writer and I'm really happy and grateful to be able to share her observations on Awareness Day with you today.  She is always very generous about sharing her experiences in helpful and non-judgmental ways.  (If you are interested in a little more background information about the history of the May 12th Awareness Day, check out the blog post I did in 2009, "Today is International Awareness Day, and there are an unprecedented number of ways to participate without ever leaving home.")
Without further adieu, here is Toni's article. 

Awareness Benefits Me

I am grateful to know of Florence Nightingale's long suffering the last 20 years of her life (1820-1910) through Awareness Day thanks to Tom Hennessey, Jr, who established it through his own ME advocacy group, RESCIND.

I think of Nightingale's last 20 years in her time often. She was isolated though living with family. There were no telephones, no Internet, no Facebook, no Twitter, only paper and pens for writing letters, the postal service, newspapers. At least she had paper and pen and family. But families can be thorny relationships, especially when chronically ill.

While I'm grateful for Nightingale's birthday as a set point to consider our similar conditions to Nightingale's, bringing awareness to others as often advocated by support groups feels like too much work for me.

Maybe those who are new to these conditions or those living with partners, spouses or other care-givers feel moved to write to members of Congress, the president and various government health agencies asking for attention, for a cure, for help.

I find such efforts are overwhelming.

Efforts to let people know we who suffer these fairly invisible conditions are here and needy of resources are way too much for me to consider even though I now feel better more of the time than when first diagnosed in 1997.

I am finally able to appreciate I am too disabled to do much else but pay attention to and care for myself.

When I was first diagnosed and for several years afterwards, I felt pulled to DO something, had the drive to lobby and write a few letters, attending meetings and giving testimony to the federal CFS Advisory Committee, even appearing on a local Fox television news show talking about my illness, my losses, crying about "losing" "family and friends."

I didn't handle those outings at all well. I complained to organizers about other lobbying patients' behaviors. I did not express myself well to those I lobbied. My efforts made me much sicker for weeks or months afterwards as well as on the days I traveled to be there sitting up and moving around far too much for someone with severe Orthostatic Intolerance (which is a form of Dysautonomia underlying many cases of CFS and FM).

Awareness efforts seem to have benefited me the most. All those outward awareness and lobbying efforts going so badly, wearing me out so consistently, taught me to stay home. Paying attention to my body, my own self-care and then discovering gratitude practice for what is going well in my life interrupted the cycle of overdoing which is so detrimental to my body. With gratitude practice, I am calmer, more attune to what I have even with my limitations.

I’m fortunate and grateful to have help around the house. This was obtained through a rehabilitation center who wrote to Developmental Disabilities Agency of the Federal Department of Health and Human Services agency (DHHS) on my behalf. Several years later, in person help arrived after I was placed in "emergency" status with a local helping agency.

It is more than enough to have to discuss my disabilities with those coordinators and aides who help me in my home.

My family, for the most part, are very busy. They find my disabling conditions overwhelming and painful to witness. Several family members suffer similarly as I did at their younger ages. Fear of becoming disabled like me makes it especially painful for family as I arrive horribly sick from my effort to get to, or, having had a car accident on the way to a family event.

Awareness of our conditions in all of their intricacies and layers of contributing behaviors is most important for healing. I learned from other support group members about my conditions and how they are related and overlap which was a college class-worthy education. Then it took years to incorporate what I had learned into living with my conditions. I'm still incorporating what I have learned 
13-1/2 years later.
 

Knowledgeable support group members offer valuable information about these similar, overlapping conditions. Doctors usually have not experienced such symptoms and don't have time to discuss how our conditions and activities influence our bodies. 

We are teaching our doctors by discussing, as best we can, in intimate detail, how we live with these conditions. Every helping practitioner appointment is an awareness opportunity for both the practitioner and me.

I find it an enormous amount of work to pay attention to how my body is doing on the supplements, foods, medication I take in. it's a lot of work to notice how my body is handling teleconferences and trips to the doc or shopping. I never realized, for instance, until I was so disabled, how many separate tasks are involved in "shopping." To notice how I, my body, is doing is work worth the effort when I am able to do it.

Awareness of, paying attention to ourselves and how we are, how we behave in as many situations as we can handle may seem self-conscious, self-centered, self-obsessive. Perhaps it is more that I am overcoming self-neglect with self-love and self-acceptance. 


I am grateful for the enormous amount of awareness of myself and my body I have learned, am learning, since accepting how truly disabled I am. I am grateful to realize how my disability means doing anything causes symptoms in the moment or in a day or two which lasts days, weeks, months. 

I no longer enjoy the luxury of spending energy on protesting or pointing out what is lacking in the world. Nor do I continue to ask that anyone else make their conditions worse by fighting on my behalf.

Becoming aware of and adjusting my life for my disabilities is more than enough for me to do. Becoming aware of all for which there is to be grateful is more than enough for me to do. Writing and talking from my recliner on a laptop and phone about these things for and with those suffering similarly which helps me become more aware is more than enough for me to do. These are the efforts that are worth it for me today in my new awareness.

Toni Marshall
May 12, 2011
 You know I had to stick a picture in here somewhere!

1 comment:

Good Days said...

Great information Toni!

I work for an organization, Good Days from Chronic Disease Fund, that works with patients to help them get the medical treatment and care they need at an affordable price. While we cannot take away the expenses completely, we try to lessen the burden as much as possible. Visit our website for more information on our efforts, and to learn what you can do to help us, help so many. http://www.gooddaysfromcdf.org/

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